Archive for 2013

The top five ways you can help as a caregiver

My husband and primary caregiver, Patrick, wants to get in on the blogging, so I’m turning this post over to him. Here it goes:

Hi all!

My name is Patrick Spott and I thank you for this opportunity to “speak” on the topic of “caregiving.” Some of you may know that my wife Chris was the 2013 Lupus Foundation of Minnesota (LFM) Ambassador. Our 14 years of marriage have been burdened not only with lupus, but rheumatoid arthritis, celiac disease and a ...

My pregnancy first scare

Being pregnant adds a whole new meaning to a lupus scare. It’s not just you you’re looking after.

I woke up one morning and took my socks off. They weren’t very tight socks, but they had left big indents and my legs were very swollen. I had suspected a little swelling over the course of a few days, but didn’t think anything of it really.

But when I noticed it in the morning, it threw me off a little bit. With my ...

What I was told about lupus and pregnancy

My lupus was fairly stable for about a year and a half before I got pregnant, so I am able to see a specialty OB, (one level above a normal OB) but do not have to go to the maternal fetal medicine doctor (the highest specialty level) on a regular basis. In the University of Minnesota system, all lupus patients who are pregnant see the maternal fetal medicine doctor at least once during their pregnancy. I had my appointment at ...

Uniting for a common purpose

We recently finished the Lupus Walk for Hope and 5K in Plymouth on September 14, Rochester on September 28, and the last event in Duluth on October 5. Time has flown by, as it seems like it was just last week we were in Duluth. I’m grateful to have participated in all three Walk/5Ks and even more grateful my body decided to cooperate with me through the weather, travel, and excitement of it all.

Surviving the first trimester with lupus

I can imagine that the first trimester for every pregnant woman is nerve-racking. The first trimester with lupus is even more so. It’s nerve-racking, overwhelming, exciting and scary all at once. Not only do you have to worry about taking care of yourself AND a baby, you also have to worry about miscarriages and how your lupus is going to affect your pregnancy (and your baby).

With lupus I was at a higher risk of miscarriage. I have talked to a ...

The biggest decision I’ve made with lupus

Hi, my name is Kristie Bauer. I was diagnosed with lupus at the age of 17. I am now 26 and have been through so much. Sometimes I like to look at lupus as an adventure. It keeps life interesting. Usually when you least expect it. Lupus has affected me in many ways including my heart, lungs, kidneys, joints, muscles and more.

Since being diagnosed with lupus, I have graduated high school, moved away to college, graduated college, got my first ...

Support comes in all forms

Lupus is a chronic disease which means it’s something that is life-long with no cure. I am doing well today, but that does not mean that’s true tomorrow. I knew I would be dealing with lupus for the rest of my life. Given that, I quickly realized I would have to rely on, and ask for support, from those around me. For someone who is fiercely independent and rather “Type A,” this is very humbling. Asking for help used to ...

The good days

Have you ever heard the phrase “It’s a good day.” said by someone who has health issues? Many people with chronic illness know what good days and bad days are. For me, a good day with lupus means I can move relatively free without pain, I think clearly, and I can do many of the (sometimes simplest) things on my to-do list.

From bed to bench and from bench to bed

The Lupus Foundation of Minnesota Fellowship was (no exaggeration) the most productive, meaningful, and inspirational experience I could have imagined my summer to be. Not only did I gain research experience and scientific communication skills, but I met peers, mentors, and patients who impacted my perspective on clinical and translational research.

Having the opportunity to interact with patients during my fellowship (with the courtesy of my PI, Dr. Erik Peterson) significantly and positively affected my fellowship experience. I am ...

Flares and bad days

When you have lupus, you have periods of disease remission and flares. Remission may seem like the disease is gone, but the reality is it never goes away; it’s just quiet. A lupus flare is a period of heightened disease activity which for me, ranges from mild to moderate and to severe. I’ve had both remission and flares all in the same day. Lupus turns on me that fast. After being diagnosed, I’ve become very aware of how I am ...